Endometriosis is a truly cruel condition that causes physical, sexual, and emotional pain. With approximately 190 million individuals worldwide affected by the illness, including one in every ten American women, it is alarming that the disease has been shrouded in silence for so long. This chronic gynecological illness affects everyone with a uterus, regardless of gender identity, yet it often goes undiagnosed due to its symptoms being attributed to other physical or psychological concerns. Regrettably, many patients presenting with endometriosis-related pain are dismissed and told that it is “all in their head.” However, the silence surrounding endometriosis is slowly being shattered, thanks to the courage of celebrities such as Lena Dunham, Chrissy Teigen, Amy Schumer, and Whoopi Goldberg, who have bravely shared their own stories.
Padma Lakshmi, a well-known cookbook author, actress, and TV show host, founded EndoFund (formerly known as Endometriosis Foundation of America) in 2009. Her relentless battle with endometriosis, which went undiagnosed for 23 years, inspired her to create this foundation. Lakshmi’s goal is to ensure that others do not endure the same lengthy and painful journey to diagnosis and treatment as she did. EndoFund has played a significant role in raising awareness of endometriosis, bringing the illness into the public eye and encouraging dialogue.
As a couple and family therapy professor, clinician, and researcher, I have personally experienced the challenges of living with endometriosis since my diagnosis at the age of 19. This personal journey ignited my passion for exploring how endometriosis affects individuals in all aspects of their lives, particularly their intimate relationships. To gain a deeper understanding, I conducted interviews with ten couples, delving into their experiences of diagnosis, treatment, and day-to-day life with this debilitating disease. Through their stories, I have identified several key recommendations for navigating the impact of endometriosis on relationships.
Endometriosis occurs when the endometrial cells that usually line the uterus implant themselves in various areas outside the uterus, including the ovaries, fallopian tubes, and abdominal lining (peritoneum). During each menstrual cycle, the uterus sheds its lining, which is expelled through the cervix and vagina. However, mislocated endometrial cells cannot be expelled, resulting in internal bleeding, inflammation, and pain. The severity of endometriosis is typically categorized into stages based on visual confirmation of the disease, ranging from minimal (Stage 1) to severe (Stage 4). Importantly, the stage of endometriosis does not correlate with the experience of pain.
One of the most significant challenges individuals with endometriosis face is a delayed diagnosis. Symptoms, such as intense pain during the menstrual cycle or discomfort during sex, are often attributed to “normal” pain or other unrelated factors, such as a history of sexual abuse or psychiatric issues. Consequently, individuals with endometriosis must endure an average of seven years before receiving a definitive diagnosis, typically confirmed through a procedure called laparoscopy. This delay in diagnosis not only prolongs suffering but can hinder access to appropriate treatment and support.
Endometriosis is not just physically painful; it also exerts a heavy emotional burden on individuals and their relationships. My interviews revealed countless stories of individuals feeling dismissed by doctors and professionals, leading to a sense of not being believed and understood. Notably, endometriosis can have profound effects on education and employment, resulting in individuals struggling to keep up with their schooling or facing challenges in their careers due to frequent absences. The strain reaches intimate relationships, as partners often grapple with their own emotional turmoil, ranging from feeling helpless to experiencing guilt for causing their loved one pain during sexual intimacy.
Reflecting on my personal journey and the experiences shared by the couples I interviewed, certain actions and approaches can help break the silence surrounding endometriosis. It is crucial for support systems to educate themselves and learn about the intricacies of endometriosis, as this directly benefits the individual living with the disease. Separating the person from the disease is essential, as it allows those who are affected to understand that their loved one’s pain is a result of endometriosis and not a reflection of their relationship. Engaging in open and honest communication can make a significant difference: using “I” statements instead of “you” statements reduces defensiveness and fosters connection.
My research participants also emphasized the importance of believing and validating their pain. Sharing their experiences and having them acknowledged as real and significant is crucial for individuals with endometriosis. Empathy plays a pivotal role here, as it fuels connection, while sympathy can perpetuate disconnection. Approaching someone with endometriosis from a position of empathy sends a powerful message of collaboration and support.
Breaking the silence around endometriosis necessitates collective effort and understanding. By educating ourselves, separating the person from the disease, and practicing empathy and open communication, we can create an environment in which individuals with endometriosis feel seen, heard, and supported. Together, let us shatter the silence surrounding endometriosis and pave the way for greater awareness and compassion.